Don’t.stop.me.now (coz I’m havin’ a good time!)

In a few hours I will know if there will be any more “active” treatment offered to me, or I will just bide my time on chemo for the rest of my days. There has scarcely ever been more at stake….if my recent SIRTEX treatment has worked on my liver, and my lungs are stable under a centimetre, then I could be off sooner rather than later to a whizz bang machine with a very gung ho doctor attached apparently, who might very well be able to annihilate those four pesky little buggers for the time being. On the other hand, if I do not fit the criteria (and so much could go wrong – not enough shrinkage from SIRT, lung tumours grown, more tumours in lungs, liver or anywhere else will automatically exclude me from this treatment) and I just have to press on with chemo, I wander into really unknown territory (oh what the fuck am I talking about, my whole life is unknown territory now!) I am on second line chemo, it is the last “big gun” and my next infusion will be number 11. The effectiveness of these chemo regimes, though very variable, generally starts to wane between 10 and 15 treatments, though certainly there are people who have had many more than that. But you can see where I am coming from I am sure. I am not ready to start looking at trials which are seldom very effective, I am not ready for the tide to turn, I am not ready to start looking the grim reaper dead in the eye, not by a long shot. I want a look at this radiation machine like I have never wanted anything in my life.

I don’t really have any theories on what this afternoon will bring. Certainly there have been MANY signs that my liver has improved. My liver function tests have dropped to better levels than they have been in around 12 months, and only since SIRT, so logic has to say there must be something in that. I still slip into fugue like sleeps or or two times a week, complete, all consuming exhaustion where I can sometimes sleep for most of the day, but around those times I am doing astonishing things like walking most of the footprint of Southland which is a huge shopping centre, and standing up for an hour while the kids fucked around in Smiggle trying to decide what they wanted to do with their Christmas funds. I can’t really remember the last time I could stand for an hour, but it’s been a bloody long time. I’d have to say I’d be surprised if my liver tumours have not shrunk. But the lungs..different story. They tend to grow faster than my liver tumours, and they have only had a patchy chemo regime to hold them steady in the last few months. I am not symptomatic in my lungs, so I have nothing to go on. In a few hours, the truth will be out there.

One thing I am certain of is that in the last month or two, I have started to find a real peace within myself that eluded me for most of 2015. 2014 was not too bad, I still had hope in the shape of the liver resection, everything was shrinking pretty well, I felt generally quite well, and I knew there was a small chance that I could beat this. 2015 I didn’t fare so well, I experienced significant declines in my mental health that I had to learn to deal with, I entered the world of DEFINITELY TERMINAL CANCER, I had many medical setbacks, and there were several occasions where I believed that the end was not too far away for me. So, as a consequence, I started to withdraw a little again, from my husband, my children, my friends. Yet now, as I enter this third year of having terminal cancer, a year that I thought I would never get to start, let alone entertain the idea of finishing, I feel the ease returning. It’s not that I am in denial, that I think there will be a miracle, that I will beat this, that this death business JUST WON’T HAPPEN…I somehow sense that it is not close. And so, I learn to live again. I’ve reached out to friends, been less afraid to be vulnerable, started putting into place household routines that I can already see are bringing enormous peace and comfort to my children. I am entertaining, going out, reading more, facebooking less, loving my children with fierce abandon. Oh yes, I am having a good time, and am not ready to give it up, not by a long shot.

My Kitchen Rules 2016 bed party!

Our precious firstborn started high school last week. Emotions were high..as everyone knows, I didn’t believe that I would get to see that day. I shed some tears for sure, but in reality, my beautiful hearted bloke shed more than I did. And on that day, I once again experienced something that I have spoken about before…but beauty of a bond between my guy and myself that is born out of doing something that no one else in the world has done. We stood side by side and watched our baby, one that seemed like she was placed in our arms only a few short years ago, excitedly start the next phase of her life. We kept catching each others eye, smiling through our tears and knowing that we made that magnificent person together, along with the three that came after her. We were like the only two people in the world that truly knew what each other was feeling at that moment, because she’s ours. It’s such an incredible bond to share with another person.

And so, in closing, I can say that I am finally, slowly but surely, learning to lean on my fella again when times are tough for me. They are so incredibly tough for him that I try to protect him, but in reality, there is no way to protect him from the pain of this, and I really need him. So, I am slowly learning to stop protecting him from the intensity of my emotions, and let him be my rock. Last night we came home from respite, where we had spent a lot of time talking about what today might bring…what the next stage in the journey might be. We got into bed and laid on our pillows, facing each other and we held hands and looked into each others eyes. So much was exchanged just by our eyes…so much pain, heartbreak and hope. Generally the intensity of that would make me look away, but I didn’t. Even the most heartbreaking things can be beautiful when you are brave enough to look them in the face. We are not perfect, we fight, we scream, we say mean things to one another in times of stress, but I fell on my feet when he rode his Harley into my life. This love story has still got a lot of legs, and I won’t let go one minute sooner than I have to.

Thinking of you and sending positive and encouraging thoughts x I don’t often comment but I think of you so often. I still regret a year later not stopping you on the street in Melbourne when I saw you as I crossed the street. Its so odd to write that but I think it so often. x

I can only think to myself, how wonderful that you have your , four faries & your bloke. I would hate to think how many souls aren’t as fortunate. Keep on fighting for as long as you can. I do think of you and all the others in our too big a group. ☺😙😗😗😗😗

With tears rolling down my eyes, I listen to your story and try to emulate your strength, courage and your openness with your fella, kids and us. Many of us face journeys that are tough at times, not only health but that will come to us all, but others financial, family whatever but your truth helps us all. All our thoughts and love are with you and your journey.nn1

I have so many limbs crossed for you that if I got up off the chair I would fall over. You are the most courageous, resilient and just plain amazing woman I have come across. My love and thoughts are with you today xx